No, I’m not planning on hopping on a plane and heading to Europe. Read on and you’ll understand the subject line of this post…
As a mom-to-be, I’m reflecting on my future and what being a parent can mean. The responsibilities, the adventures, the challenges.
Tomorrow I’m heading to Halifax and will be staying in Dartmouth for the National Conference on Tourette Syndrome Plus.
It’s been three years since I last attending an national conference with the TSFC. A lot of the great people at these conferences are like family to me. I’ve known them for years and we’ve gone through lots of ups and downs together. I have multiple “moms” that span from Toronto, Atlanta, and beyond.
My TS family
This other family is a unique support system that I feel very fortunate to have found. Everyone’s situation is different and no challenge is viewed as too small. And together we celebrate successes. Heck, when I was much younger, my mom had some major bragging rights one year when she managed find a type of sock that didn’t drive me nuts (sensory issues for the win!). You can laugh, but it’s just one of the fun adventures you can experience with there’s a spectrum disorder living in your home or family… and often more than one of you have something that makes you unique. It is typically hereditary after all!
There are so many things I haven’t written about yet here… but will someday. Just need to find the time!
One session at the conference that I’m really looking forward to attending is the Moms’ Session that’s happening tomorrow night. Typically on the first night of the conference, there will be meeting rooms for attendees: the moms, the dads, the youth/young adults, the kids, the adults. Each group meets for a couple of hours. The moms and dads find this to be a really great session because they can talk to other moms and dads separately. Moms bond over mom issues; dads bond over dad issues.
Historically, always been part of the sessions for youth/young adults or the adults. But this year, I’m going to the moms’ session. I’m really looking forward to it. I’ve wanted to go to it for years and now it’s happening.
I’m finding it hard to find the right words to explain what’s going on in my head right now. I’m not hoping for our little one to have Tourettes, OCD, ADHD or anything else, but I’m not dreading the idea of that possible reality.
When I was born, I was a normal baby girl. You might even say I was a normie. My parents had no idea that I was about to introduce a whole new world to them in just a few years. But when that happened, they were amazing. They read what they could find and spoke with anyone who had knowledge on the topic of TS and its other related disorders. And they didn’t even have the Internet to inform or misinform them!
Nowadays, it’s very different. There’s too much information. I can’t even imagine how overwhelming it must be to a parent who has just found out their child has TS and they haven’t heard of it before (or what they have heard are the frustrating stereotypes I still face now and then).
The title of this blog post is brought on by a poem that I first read at one of the national conferences many years ago. I think it’s often shared at the moms’ session, but is typically in every conference binder.
Read the poem and then I’ll give you some of my thoughts on what is discusses…
c1987 by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
I always fill up when I read this poem. Maybe it’s because I feel so bad for the parents that were whisked away to Holland and didn’t have a choice. Maybe I get emotional because all I know is Holland? Italy was never an option for me… so it’s like I’m being told that where I brought my family wasn’t their destination of choice and it’s my fault. Some may think my family was missing out by not having a normal little girl, I don’t want to see it in such a negative way. It’s not fair to me or my family.
Starting a family
When I was in my early-mid twenties, I was asked (sometimes by total strangers) if I was planning on having children. I would say yes and more than once I received a reply like “Oh really? Well I hope they don’t have Tourettes. I really hope they don’t!”
How the heck do you respond to that? I mean really, you’re saying you don’t want me to have a child that has something I’ve lived with every day of my life. Yes it’s not always glamorous, but I’m not a freakin victim! Yes there is a possibility that my child/children could have TS as well as some other disorders to a high degree than myself.
I actually had someone tell me I should consider not having children because, “What if they have Tourettes that’s worse that you? That’s a sin! Do you want them to have to suffer like that?” It was like they described it to be some sort of Russia roulette – neurological edition. Maybe they’ll get it, maybe they won’t. Maybe it will be worse!
No matter what happens, our little one (and other future little ones) are going to be showered with love and support. They’ll have their parents, their extended family and friends and their TS family all backing them up. Even if they don’t have any disorders or behaviours that provide challenges, they may be able to help support someone who does. And that’s really important too. One thing I strive to do at the conferences is to talk to parents who are struggling. Let them know that it’s going to be OK. That their kids do appreciate them… even when they seem to say or do otherwise. I tell them that I know from experience and encourage them not to give up.
The entire weekend at the conference will be great. At the moms’ session, I’m hoping that I can learn and gain some new perspective on parenting, but can also provide a unique point-of-view. I’m someone who’s grown up with the disorder and was diagnosed at a young age. Now I’m preparing to start my own family.
I’m not going to Holland, I’m already there and the people here are great.